Tag Archives: supports

The Scientist and I moved cross-country a few years ago. We made the drive In four days and by the middle of the fourth day I was on the verge of shutdown. It was way past lunch time, we were out of snacks and we were driving through Middle of Nowhere, West Virginia.

When we finally came upon a place to eat it was a McDonald’s. Just the thought of eating fast food made me feel nauseous. I said I would walk the dog around while The Scientist went inside to order. When he asked what I wanted, I said “Nothing.” By the time he came out with a big bag of food, I was sitting on the curb by the car with my head on my knees, wishing I could teleport myself the final four hundred miles to our new home.

The Scientist sat down to me and said,”I got you something.”

Even though I was so hungry that I was light-headed, I couldn’t imagine being able to eat a burger or fries.

“I don’t want anything,” I said.

Undeterred, he reached in the bag and took out a container of oatmeal. When he opened it, I saw it was topped with fresh blueberries. He’d found the one thing on McDonald’s menu that wouldn’t totally repel me. I was so happy, I nearly cried.

Accommodations make life easier, but as Otterknot pointed out in a recent comment, asking for accommodations often sounds simpler than it is.

Why is that? Why are we so reluctant to ask for something that will improve our quality of life, our relationships or our ability to succeed at work or school?

The biggest obstacle is often disclosure. Asking for an accommodation or support means disclosing that we’re disabled. Accommodations are for disabled people, after all. For those of us who have spent a lifetime instinctively trying to pass as nondisabled, it can be hard to make the mental shift to being openly or even semi-openly disabled.

There is also the question of whether the other party will understand the nature of hidden disabilities. Unlike a visible disability, a hidden disability carries a certain burden of proof. So we hesitate, wondering whether the other person will believe that we really need this particular accommodation or perhaps dreading the amount of explaining and/or convincing that will be involved.

Finally, there is the specter of self-doubt. Do I really need to ask for this? Can’t I just continue to suck it up and power through like I always have? Maybe if I work harder, I don’t really need any supports. Continue reading Asking for Accommodations→

My local library has a big collection of autism books and I’m slowly working my way through them. I just finished reading one about how parents can help their autistic teen transition into adulthood. It was a fairly thick book, packed with information on friendship, dating, high school, college, work and living independently. Curiously, the only mention of marriage and parenting was a few pages acknowledging that some autistic people get married and even have children (who, the book suggested, would have very difficult lives, as they were more likely to be autistic themselves, on top of having an autistic parent). It concluded with a sentence lamenting how little we know about married autistic people because the topic just hasn’t been the subject of enough studies. I wasn’t sure whether to laugh or throw the book across the room.

But I kept reading because the transition to adulthood is important and I’m always looking for good books to add to my resources page.

There was a chapter on “living situations” near the end of the book. As I read through all of the possible living situations that the authors suggested an autistic person might find themselves in, I noticed a glaring omission. There was information about living with a parent or a caregiver, living in a group home or facility, living with a roommate or living alone. But there was no mention that an autistic teen might grow up to live with a partner or spouse, let alone with children of their own. And that got me thinking about why autistic parents are so often invisible.

There seems to be a tacit assumption that if we can manage to find ourselves a partner or spouse and have children, we’re just “not autistic enough” to need any sort of support services. This month’s article at Autism Women’s Network, Motherhood: Autistic Parenting and Supports That Make a Difference, rejects that notion and looks at some of the supports that can make a difference in the lives of autistic parents, especially moms on the spectrum.

I don’t want to break out ofit or stretch it or push myself out of it. Mostly I’d like to build a blanket fort in my comfort zone and never leave. But I know that isn’t reasonable. As an adult with responsibilities, there are times when I have to step outside my comfort zone.

My approach to these times used to involve a lot of metaphorical pushing and breaking and stretching. I would power through, often with an angry determination to just get it over with. This made hard things harder, but I didn’t realize that I had a choice.

Recently–and entirely accidentally–The Scientist showed me that there’s a better way to go about getting out my comfort zone. After doing some post-game analysis of why what we did worked, here’s what I’ve come up as a framework for helping someone step out of their comfort zone in a gentle, supportive way: Continue reading Stepping Outside My Comfort Zone→

Doing What I Want Experiment: Week 2

Realizations from week 2:

24/7 self-improvement doesn’t work, or at least it doesn’t work for me. I’ve given myself permission to fall back on old habits occasionally if I’m feeling too vulnerable or uncertain. More on this in a future post because it feels important.

Convenience should not be a major deciding factor for fun activities. Fun or rewarding activities are worth investing extra effort in.

Being open to spontaneity is part of good decision making.“But I always . . .” and “But I never . . .” thoughts are not.

Being nice to myself is a valid reason for making a decision. I don’t need further justification.

For minor decisions, I don’t have to make the absolute best possible choice, I just have to make a choice I’ll be happy with. It doesn’t matter whether the Mai Tai will make me fractionally happier than the Margarita or I like the blue sweater slightly more than the red one. If I’ll be happy with either choice, I can choose on a whim and be done with it. I don’t have to try to be more happy or as happy as is humanly possible as the result of a decision. Buying a sweater is not the same as buying a car. Continue reading Monday Morning Musings (8/12)→

Aspies are faced with some challenges that can make being self-employed very difficult. The two biggest potential roadblocks are issues with executive function and uneven social skills.

Executive function affects things like planning, initiation of actions, problem solving and attention switching. If you have poor executive function, the lack of accountability inherent in self-employment can be a recipe for disaster. I’ve developed a lot of systems to keep me on track and impose order on my work day–things like keeping lists, using a dayplanner, creating artificial deadlines, setting alarms, making notes to myself, and rewarding myself for meeting goals.

No matter what type of business you have (or what type of job you do), executive function is fundamental to staying on track on a day-to-day basis. If you can’t master the basics of managing a daily schedule and completing tasks on time, then being your own boss will probably make you more miserable than happy.

The other big challenge is social skills. While it’s possible to structure a business or freelance position so that you have very little contact with others, that isn’t always the case. Some common freelance/self-employed positions lend themselves to solitary work and others require a lot of contact with people.

For example, a website like Elance makes it possible for freelancers and small businesses to bid on and complete jobs entirely online. I’ve hired freelancers and gotten excellent work done without ever speaking with anyone over the phone or in person. If you’re skilled in a field that primarily requires creating deliverables (websites, graphics, text, analysis, code, etc.), you may be able to transact most of your business without a lot of face-to-face interaction (if you prefer).

On the other hand, turning your skill into a career may require you to interact with lot of people on a daily basis. If you’re an expert bicycle repair person, you’ll have to talk to people about their bikes to find out what work needs to be performed. But–oh–wait! I bet an someone with a special interest in bicycle repair would love nothing more than talking to people about repairing bicycles!

That’s another benefit to turning a special interest into a career. I find business-related interaction to be less stressful than general social interaction. If I’m talking to someone about a project then I’m in my element and can navigate the conversation fairly confidently. I’ve even been interviewed by writers for articles and books in my industry as an “expert” and actually enjoyed those opportunities. It was fun to talk about a subject I know well (even if the interviewers had to keep reminding me to slow down so they could understand me). Continue reading The Challenges of Being a Self-Employed Aspie→

One of my special skills is goading people into doing things that I think are great ideas. A few of you have been on the receiving end of this.

When it comes to getting my own stuff done, though, I have a tougher time making things happen. If you have impaired executive function courtesy of autism or ADHD (or some other neurodivergence), you know the feeling. How many times a week do I think “I really should spend some time on my novel” and “I’m way behind on responding to comments” not to mention “The kitchen counters could use a good wiping down” and “When was the last time I vacuumed?”

I’m super organized when it comes to work and bill paying and anything with a deadline. But those things that I should be doing regularly–which includes everything from housework to writing and keeping my blog in order–that stuff slips away from me so easily.

So when Slepa Ulica (who comments here under the username Anonymus) mentioned that they were designing a “smart to-do list” that would serve up tasks to do based on a whole list of customizable parameters, I got just a little excited.

A to-do list that understands crummy executive function! A to-do list that would give me one appropriate task at a time! A website for neurodivergent people created by a neurodivergent person! Much goading encouragement ensued on my part and much work on Slepa Ulica’s part.

1. The fish! I know that’s a silly thing to put first on my list, but the illustrations make me happy. More importantly, the interface is sensory friendly. Plenty of white space, no busy layouts, moving images, sounds or loud colors to assault my brain. Just the minimum of information that I need, accented with whimsical illustrations. (The website also has a boatload of accessibility features which you can read about in detail if you like.)

2. Unlike regular to-do lists, Goal-Fish understands that not all tasks are created equal and we don’t always feel up to tackling certain chores. The constraints feature allows you to limit tasks to what you’re capable of doing (based on energy level, time of day, etc.) and how much time you have. Once you’ve input your constraints (which will take less time to do than it took you to read about it here), you press a button and the software gives you an appropriate task.

For example, I set up a 15-minute time window, a pain (you can change this to spoons, energy, etc.) level of 4 and no helpers. The software gave me “change sheets” which I should probably go do now because I have no idea when I last did that. Increasing my pain level to 6, it told me to take out the trash. When I decreased my pain level to 1 and increased the time to 30 minutes, it told me to clean out the fridge (another task I should do more regularly).

3. What you see when you first start using Goal-Fish is Slepa Ulica’s tasks and categories. You can edit tasks to fit your needs, add your own tasks, assign them to categories, change/create detailed instructions for each task and modify the constraints. Depending on how much time you want to spend, you can do quite a bit of customizing.

The fish is doing laundry. The fish wants you to laundry, too. You don’t want to let the fish down, right?

4. It’s free. Wow, right? Of course, if you’re feeling generous and can afford to, you can throw a few bucks Slepa Ulica’s way. If you do, you’ll get an additional 20 tasks and 6 categories added to your account. Plus the good feeling that comes along with supporting a cool project by a member of our community. Just use that bright shiny donate button at the top of the screen.

5. The detailed instructions can include as many or as few steps as you need. Some of us may be fine with “do laundry” as a single instruction. Others may need a detailed list of steps to complete more complex tasks like doing the laundry. I can see this making a great independent living tool for pre-teens, teens or adults who need support in completing daily self-care tasks.

6. It almost makes doing chores fun. Clicking the button and getting a semi-random chore makes completing tasks feel like part of a game. Also, having a time limit on a chore makes mundane tasks less open-ended and onerous. If I decide I want to spend 15 minutes on a chore and the software tells me to go pick up stuff, then I feel good about spending 15 minutes or less picking stuff up, even if I don’t get every last thing put away. Without that limit, I’ll avoid even starting because I know I can easily end up spending an hour straightening up, getting distracted, drifting off into other tasks, etc. and then feel like I got nothing substantial done.

I’m going to close this out with Slepa Ulica’s description of why the software is called Goal-Fish, because it ties in nicely with #6 and it made me smile:

“I got to thinking that my todo list is kind of like one of those digital pets where you have to order it to do things, feed it, water it, and take care of it, except in reverse. I’m the digital pet, and the computer is the person telling me to clean my room.”

If you have questions or comments, Slepa Ulica (Anonymus) has promised to reply to them here or you can find an email link at the bottom of the software’s help page.

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Obligatory disclaimer: I didn’t receive any compensation for reviewing the software/website.

Disclosure, it turns out, is a sticky issue. My first instinct was, “This is great! I have an explanation for my difficulties. I’ll tell everyone and they’ll be as happy about it as I am.”

Er, no. Disclosure makes people uncomfortable. Most people don’t know what to say. Many will reassure you that it makes no difference and then proceed to treat you differently. Even in the people who are very accepting, you may notice the occasional patronizing statement or doubt about your competence–little shifts in the way this person sees you now that you’re autistic.

Not that you weren’t autistic before, of course. But handing a label as loaded as autistic to another person changes things, like it or not.

Who to Share Your Diagnosis With

Some people openly disclose to everyone. Others share only with close friends and/or family. Some people disclose in stages, starting with an inner circle and working outward as they feel more comfortable.

As you think about disclosure, keep one thing in mind: it’s irrevocable. Once you share your news with someone, you can’t unshare it. You also can’t guarantee that the person you’ve shared with will keep your disclosure private. They may inadvertently or intentionally “out” you to someone you aren’t ready to share with.

Still, many of the people in our lives already know that we’re a little different. Generally, most people choose to share their diagnosis with the people closest to them. This might include immediate family, close friends and/or a significant other. If you prefer not to share beyond this inner circle of people, be sure to make it clear when disclosing that your diagnosis is private information.

Beyond your inner circle, it may become harder to decide who to share with. Obviously, you don’t need to notify casual acquaintances but what about work colleagues, supervisors, professors or others that you interact with regularly?

It may help to consider the consequences of disclosing versus not disclosing. If you’ve only recently been diagnosed then you already have a good idea of what not disclosing looks like. Are you happy with the current situation? Would disclosing allow you to ask for needed supports or accommodations? Is it possible that disclosing would create more risks than benefits?

There are real dangers to disclosure in some situations. You can open yourself to discrimination and bias, especially when it comes to work, school, or your parenting rights. I’m not writing this to frighten anyone. Just be sure you’ve done your homework and thought through the possible consequences before choosing to disclose your diagnosis. If you’re unsure, consider talking with a trusted friend or mentor before making a decision.

What to Say

There are two ways to go about disclosure. You can make a full disclosure, using the words autistic, Asperger’s syndrome or autism spectrum disorder. If you decide to go this route, be prepared to do some education. There’s a good chance the other person’s first reaction will be “but you don’t seem/look/act that autistic” or “I never would have guessed” or some other similarly awkward reply.

Preparing a short script describing autism as a neurological condition that impacts your communication, socialization and sensory processing can be helpful. The operative word here is short. You don’t need to give the person a TED talk on autism. Just share a few facts relevant to your situation, including what kind of accommodations or supports you’re requesting.

If you aren’t going to request accommodations, it’s probably best not to disclose in a work situation, unless you’re the kind of person who is confident with being out to everyone. Because of the stigma associated with ASD, the risks of workplace disclosure can be significant and irreparable.

There is always the possibility that disclosure will bring with it the subtle, hard-to-prove sort of discrimination that doesn’t rise to the point of being actionable under law. Although autism falls under the purview of the Americans With Disabilities Act, human social interaction is unpredictable and fraught with gray areas.

You may be able to request accommodations or supports without using the word autism, if that feels safer. For example, if you have a job doing data entry in a noisy workspace, you can explain to your supervisor that wearing noise canceling headphones will enhance your concentration and make you more productive.

If this request is well received, you don’t need to disclose your disability if you prefer not to. If it’s not received well, you’ll likely have to disclose that you’re autistic to gain accommodations under the Americans With Disabilities Act. It’s a good idea to do some research about your rights and your employer’s obligations under ADA before proceeding. For example, here is a list of common types of accommodations.

While ADA provides a minimum set of rights and obligations, some disability-friendly workplaces may be willing to do more to accommodate employees. On the other hand, be aware that small businesses (fewer than 15 employees) are not subject to ADA requirements. That doesn’t mean that a small business won’t be willing to work with you on accommodations, just that they aren’t required to under law.

When to Disclose

There is one more caveat to the choice not to disclose. If you don’t share information about your disability upfront, sharing it when you find yourself in a bind will probably not be helpful. For example, two months into a new job, your supervisor calls you into his office and says you’re being put on probationary status due to poor performance. This is not the time to disclose that you’re struggling because you really needed to get all of your instructions in writing or you need to have tasks broken down into smaller elements with more closely supervised due dates . . . because you have autism.

If you know you’ll need accommodations to successfully complete work or school tasks, ask for them upfront. If you discover that you need accommodations in the course of doing a task, request them as soon as possible. Don’t wait until you’re on the verge of disaster. This will be seen by most people as “using your disability as an excuse.” Fair or not, that’s how it will be perceived, possibly making it harder to gain the needed accommodations or even to keep your job in the long run.

There is also a special situation in which you may need to unexpectedly disclose your condition: an emergency. Some autistic people carry a card or letter in their wallet briefly describing what ASD is and how it might affect their responses in an emergency. If you lose speech, respond negatively to being touched by strangers, or have sensitivities to flashing lights or loud noises, this information can be especially helpful for law enforcement and other first responders. This type of disclosure can prevent police or emergency medical personnel from mistakenly thinking that you’re drunk or intentionally uncooperative.

How to Disclose

I’m going to step backward here a bit and address this to those who are diagnosed and those who aren’t because disclosure is something that I found taking place at all stages of the journey. In the very early days of learning about ASD, you may find yourself needing to talk about your suspicions or realizations with someone close to you. As you move through the self-discovery and diagnostic process, you may need to talk with family members to gather information about your childhood or confirm details about yourself.

Disclosure doesn’t only happen after a diagnosis. It can take place in stages, along a continuum. So here are some suggestions that may apply during different stages of the process:

Request a formal meeting or schedule a conversation. This signals that what you intend to say is important. Most appropriate for work and school related disclosures. Also good for situations where you’re concerned that the other party may not take you seriously.

Raise your diagnosis informally in conversation, when the opportunity arises. Probably more appropriate for those you anticipate being supportive.

Share an article about ASD. This is a good way to open the “does this sound like me?” conversation with someone close to you.

Send an email or letter disclosing your diagnosis and sharing relevant background information about ASD. Good for disclosing to people you find hardest to tell, for example family members who you’re concerned might have a critical reaction.

Share a form letter or informational flyer. An efficient way to share key facts in situations like emergencies or when requesting accommodations from public places (like a theme park). The book Ask and Tell has some good examples of form letters for specific situations.

Enlist an ally. If you’re faced with an especially hard disclosure situation, an ally can help you deliver the news, answer questions and/or offer moral support, especially if there’s a chance you might become nonverbal during the encounter.

Why Are You Disclosing

Ultimately, this is the most important question. Before you disclose to someone, ask yourself what you expect to happen. Are you disclosing to ask for accommodations or understanding? Are you seeking acceptance and support?

What if you don’t get what you’re seeking? Sadly, this is often the outcome. Disclosure is hard. It requires a certain amount of fortitude, not just for the act of disclosing but for standing up to all that follows in the wake of it. Think it through, go slowly and enlist support from trusted people in your life.

This is the second in a series of posts about being a mom with Asperger’s–a combination of reflections on how my AS affected my parenting abilities and some advice that I wish someone has given me when I was struggling to make sense of being an unconventional mom. Hopefully some of what I learned the hard way will be useful to other moms in the same situation.

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I know I haven’t been a perfect mother but I also know that the perfect mother doesn’t exist. As moms, we do the best we can under often challenging circumstances. We each have our individual strengths and weaknesses as parents. But aspie parents have some unique strengths and weaknesses.

Everything from issues with sensory overload to problems with social interaction can affect our ability to parent effectively or even competently. In his starkly honest assessment of aspie parents, Dr. Tony Attwood lists some of the many challenges a family may face when one parent has Asperger’s: “the imposition of inflexible routines and expectations . . . the intolerance of noise, mess and any intrusion into the parent’s solitary activities, the perceived invasion of the home by the children’s friends, and a black and white analysis of people.”

These potential challenges may begin to emerge during pregnancy and quickly intensify with the arrival of the baby.

Babies are stressful. They’re unpredictable. They’re messy. They’re demanding. They don’t care if mom is sleep-deprived or suffering from sensory overload or finds breastfeeding painful or needs a couple of hours of alone time to regroup. When you throw in postpartum hormonal fluctuations and the challenges of Asperger’s, it’s no surprise that the result can be epic meltdowns more fit for a toddler than a new mother.

When Jess was a baby, there were days when I felt like I was going to lose my mind if she didn’t stop crying. I remember one day in particular when I found myself standing in the dining room, sobbing uncontrollablly and repeatedly banging my head against the wall. If you’ve ever seen an autistic child have a meltdown, it probably looked something like this. I can only imagine how terrifying this must have been for my husband–watching the mother of his child regress to that point.

But instead of losing his temper or fleeing, he was there to rescue me before I could slip too far into that abyss. He kept me tethered to reality in a concrete way that allowed me to stay connected to Jess when my natural instinct was to withdraw.

Jess at 7 months

Some Tips for New Aspie Moms

One of the keys to surviving the first months of motherhood as an aspie mom is support. All new moms need time to themselves to regroup, but for aspie moms this is especially important.

Honestly, there may be times when you feel like you can’t stand to be around your baby. He won’t stop crying or he won’t settle down for a much anticipated nap or he’s in the mood to play when you’re exhausted. Don’t feel guilty. Needing a timeout doesn’t make you a bad mother.

It’s okay–healthy, in fact–to ask for help from a partner, relative or babysitter so you can take a short break. And if getting an hour to yourself means preventing a meltdown, that’s going to make you a better mom in the long run.

If you find your anxiety level rising at a time when you aren’t able to immediately call on one of the supportive people in your life, it may help to have some strategies you can draw on to de-escalate your stress. Many of things that babies and toddlers find calming may also be soothing for moms with Asperger’s. Here are a few options to consider:

A rocking chair: Lots of adult aspies still find rocking to be soothing and when you’re doing it with a baby in a rocking chair, you’ll find that no one looks at you funny. I had two rocking chairs as a kid and a comfy rocker was one the first things I put on my wish list as a mom-to-be.

Music: Singing to your baby, dancing around the living room with your toddler or just enjoying a favorite song together can all be soothing. For a few months as an infant, the only thing that put my daughter to sleep at night was U2’s Joshua Tree album, played at what was probably an inappropriately loud volume.

Water: Many aspies say that water is calming. If you have access to a swimming pool, you and your child might enjoy spending time in the water together. Once your toddler is old enough, you may find that she enjoys playing in the tub while you soak in a warm bath.

Pets: A dog or cat is often high on the list of expert recommendations for adult aspies. Petting, cuddling or playing quietly with the family pet can be a way to spend time with your child while you de-escalate.

Walking: If you have a quiet place to walk, you may find that exercise combined with fresh air and sunshine is a good way to head off a potential meltdown for you and an instant sleep-inducer for your little one.

Driving: The same goes for a drive along quiet roads. I remember evenings when my husband and I drove around with Jess in the back seat because it seemed like the only way to get an hour of quiet time.

Of course, there’s the toddler who screams the minute you put him in his car seat and the aspie mom who finds driving stressful rather than relaxing. Not all of the strategies that worked for me will work from everyone. Hopefully this list will be a jumping off point for you when it comes to finding “rescue” activities that you can share with your child.

What People Are Reading

Yesterday I ventured way way way outside my comfort zone to record an interview on Autism Spectrum Radio. The host, Rob Haupt, asked some great questions and was easy to talk to. You can listen to our conversation here. Rob does a short intro and then the rest of show (about 35 minutes) is our conversation.

My friends Ibby Grace And Amy Sequenzia are editing an anthology titled “Typed Words, Loud Voices”, a collection of works by people who type to talk always or sometimes. They’re looking for essays, poems, stories or whatever form of expression you’d like to share your message in.

As some of you noticed yesterday, I’ve updated the blog theme to add a little color. Maybe down the road I’ll experiment with some of the new features (like this one that allows short “aside” posts). It’ll take some getting used to, I know.

And yes the remodeling is an indication of just how bored I am with all the not writing I’m doing.

Triathlon training is chugging along nicely – 3 weeks to go and I feel great, if a bit worn out. The garden is producing lots of cucumbers and tomatoes, a few eggplants and peppers. And for some reason I’m the only person on earth who can’t grown squash? With the exception of one green squash a couple of weeks ago, all I’m getting are tiny little squash that turn yellow and wither.

Besides a renewed obsession with The Sims, that’s about all that’s new around these parts.